French study highlights need for family-centered crisis guidelines

While upending visiting policies in intensive care units (ICUs) during the Covid-19 pandemic was necessary to prevent uncontrolled viral spread, preventing families from seeing their dying loved ones proved highly traumatic, according to a qualitative study from France.

In the early days of the Covid-19 pandemic, hospital visits were either highly restricted or banned outright, and many patients isolated to ICUs were left to die without friends or family by their sides. “After a death in the ICU, bereaved family members are at high risk of presenting symptoms that can negatively impact their quality of life, such as anxiety, depression, posttraumatic stress disorder symptoms, and complicated grief,” Nancy Kentish-Barnes, PhD, of the Assistance Publique–Hôpitaux de Paris at Saint Louis University Hospital in Paris, and colleagues wrote in JAMA Network Open. “Interestingly, witnessing terminal dyspnea and not being able to say goodbye to a loved one are factors associated with increased psychological burden among relatives. Thus, we speculated that the Covid-19 pandemic and the protective measures implemented in its wake may have exacerbated these negative experiences.”

These ICU experiences, coupled with the disruptions to social norms, end-of-life rituals, and mourning practices brought about by large-scale epidemics, can hinder peoples’ ability to connect with the deceased both before and after death, further exacerbating the risk of complicated grief. For their analysis, Kentish-Barnes and colleagues set out to examine the experience of family members of patients with Covid-19 who died in French ICUs, from admission until after the patient’s death.

The study authors identified three major themes of family members’ experiences—difficulty in establishing rapport and bonding with the ICU team, as well as frustration with distance communication; ICU restrictions led to feelings of “discontinuity” and a sense that their loved one had disappeared, leading to feelings of powerlessness, abandonment, and unreality; and alterations to end-of-life rituals left family members feeling robbed of closure with their loved one, leading to anger, prolonged grief, and a sense of disbelief that complicated the grieving process.

“To avoid traumatic experiences for patients, families, and clinicians, specific family-centered guidelines for crisis management are needed,” the study authors wrote. “Research in this field is required and could help develop adequate training for clinicians.”

In an invited commentary accompanying the study, Deepshikha Charan Ashana, MD, MS, MBA, and Christopher E. Cox, MD, MPH, both of the Department of Medicine at Duke University in Durham, North Carolina, called the study by Kentish-Barnes and colleagues “an important contribution to this literature because it highlights the deeply moving lived experiences of family members of patients who died near the height of the Covid-19 pandemic (between April and May 2020) in 12 French ICUs…These narratives share the common thread of disruption and restoration of human connection.

“Because it was considered necessary to disrupt family presence in the ICU, we must think deeply and creatively about how we can restore meaningful connections among families, patients, and ICU clinicians—and at a distance, if need be,” they continued. “In other words, our challenge is to optimize family-centered ICU care absent the physical presence of family members.”

The qualitative study by Kentish-Barnes and colleagues was part of the larger, quantitative, multicenter BURDENCOV study, which explored the psychological burden experienced by family members of patients admitted to the ICU for Covid-19 during the initial surge of the pandemic in France.

For their analysis, the study authors conducted telephone interviews with families from June-September 2020, three to four months after the patient’s death from Covid-19. They used “a semi-structured interview guide that included the following themes: ICU admission, ICU stay, life during the patient’s ICU stay, end-of-life care, funerals and rituals, and grief and mourning.”

The final cohort consisted of 19 family members—median age [range] was 46 [23-75] years, and 14 [74%] were women.

Kentish-Barnes and colleagues broke down interview responses into three major themes:

Theme 1: Difficulty in Building a Distance Relationship with the ICU Clinicians and the Experience of Solitude

  • Building a Relationship Over the Telephone: Family members expressed a need for structured communication with ICU teams; participants felt a lack of support and empathy when conversations with the ICU team were limited to information about the patient’s condition. Family members took note of not only the words but also the tone, pitch, pacing, and rhythm of distance communication with ICU teams.
  • Suspended in Time and Space by New Rules: Family members reported loneliness while their relative was in the ICU due to lockdown and social distancing rules; Family members reported difficulty believing their experience was real—one respondent was quoted as saying, “It was like being in a film, I didn’t understand what was going on. What’s this story? How can it be possible that he’s gone? How did he die? Really, even today, I just don’t understand;” As the clinical trajectory of Covid-19 was initially unknown, clinicians alternatively sent positive and negative messages, leaving family members disoriented.
  • Meeting the ICU team: Participants reported that meeting the ICU team and seeing the patient generated trust in the institution; participants noted it was vital to see that the ICU patient was cared for as a person, not just another Covid-19 case; meeting the ICU team in person was described as comforting, while telephone communication was perceived as less than optimal.

Theme 2: The Patient in the ICU and the Risks of Separation

Among the 12 ICUs included in the study, there were 3 visiting policies: total ban on visits despite visits being exceptionally negotiated at the very end of life (3 ICUs), regular but limited visits throughout the patient’s stay (5 ICUs), and end-of-life visits only (4 ICUs),” the study authors explained.

  • Total ban on visits: Participants reported very strong feelings of powerlessness; the ICU team had to play the role of intermediary between family and patient, and when the family felt that trust in the team was broken, continuity was disrupted.
  • Regular visiting throughout the patient’s stay: Regular visits let family members play a role in supporting and caring for the patient; regular visiting was associated with continuity at the end of life and a sense of closure.
  • End-of-life visits only: The initial ban on visits was associated with feelings of abandonment and unreality; the possibility of being with the patient at time of death helped participants accept the situation and regain family role; participants with a loved one in an ICU that only allowed end-of-life visits expressed frustration with not seeing their family member sooner.

Theme 3: Disrupted End-of-Life Rituals and the Feeling of “Stolen Moments” With the Deceased

  • Before the funeral: The inability to access the body of the deceased in the early days of the pandemic due to health and safety guidelines was described as a “dehumanizing experience” and associated with feelings of anger and injustice; not seeing the body created feelings of doubt and uncertainty.
  • The possibility or impossibility of a ceremony: In some situations, ceremonies were impossible to organize, which was associated with feelings of guilt towards the deceased; restrictions in the number of people allowed to attend ceremonies and rules such as “the strict interdiction to not touch the coffin” were criticized, and altered ceremonies were felt to lack meaning.
  • Rituals and grief: Participants who were able to organize a ceremony to their expectations expressed feelings of relief; some participants were forced to find new ways of fulfilling shared rituals, such as streaming ceremonies online or sharing virtual moments of silence; for those who could not complete ceremonies, participants expressed anger and feeling deprived of an important ritual; these “stolen moments” were described as barriers to grieving.

“Four avenues for improvement can be highlighted from our study,” the study authors wrote. “First, it is vital to safeguard the bond between families and patients by maintaining the possibility of family visiting. Second, high-quality communication between clinicians and families should be a priority, including video calls, when possible, intervention of a facilitator responsible for supervising physician-family communication during the crisis, and other individualized approaches. Third, essential rituals at the end of life and immediately after death must be preserved in some form. Fourth, bereaved relatives should be provided with effective social support in times of lockdown and social isolation.”

Study limitations included a possible lack of generalizability due to the study only being conducted in France; potential selection bias, as participation in qualitative interviews was voluntary and thus family members with difficulty expressing their feelings may have been omitted; interviews were conducted early after a patient’s death, making it difficult to study long-term experiences; and institutions may have adapted to the pandemic over time, and bereaved family members’ experiences may have changed over the course of the pandemic.

  1. For French families who had a loved one die of Covid-19 in the ICU, difficulties in communicating with ICU staff regarding their loved one’s illness, restrictions on visiting with or speaking to the patient, and disruptions to end-of-life rituals led to highly traumatic experiences and a complicated grieving process, researchers found.

  2. This study highlights a need for specific family-centered guidelines for crisis management and research into how to develop adequate training for clinicians to facilitate end-of-life care in crisis conditions.

John McKenna, Associate Editor, BreakingMED™

Kentish-Barnes reported receiving grants from French Ministry of Healthoutside the submitted work. Coauthor Azoulay reported receiving grants from Pfizer and Merck and personal fees fromAlexion Pharmaceuticals, Sanofi, Baxter International, and Gilead outside the submitted work.

The editorialists had no relevant relationships to disclose.

Cat ID: 190

Topic ID: 79,190,501,728,932,730,933,190,926,192,927,151,928,925,934